Coping with Stress in Unprecedented Times Part 2

Coping with Stress in Unprecedented Times Part 2

In my previous post, I explored the tumult of unusual activity flowing into and out of our brains as a result of the novel Coronavirus and the worldwide response to it. The threat to lives and livelihoods, the near-total curtailment of social interaction and the departure from normalcy – all of these taken together are wreaking havoc with how we think and feel.

Worse yet might be the increased uncertainty that accompanies all this. 9/11 happened over the course of a morning. Pearl Harbor was a rallying point for action. While the devastating emotional and psychological trauma of these events can be lifelong, the events themselves were flashpoints—over in a matter of hours. We were able to begin picking up the pieces and take corrective action more immediately. With Covid-19, we’re stuck inside our homes living this new distanced reality, with serious economic impact for many, for who-knows-how-long.

As I noted in Part 1 (Blog Part 1), experts in the field of psychology and brain science  empathize with the challenges our brains are facing but also remind us that we can use our brains in an intentional way to manage our thoughts and emotions to some degree and create productive habits. We can accept that this is the new normal until it isn’t, remain positive, focus on the good things in our lives, and divert ourselves with creative and meaningful activities.

For individuals with autism individuals, the calculation is somewhat different. Most autistics thrive on predictability and structure, and struggle with change, even changes many would consider small and inconsequential. Having their lives turned upside down, as they are now, falls somewhere between extremely distressing and catastrophic.

For caregivers of children and adults with autism, the need to perform “social distancing” is incongruous. Their services are, by definition, one-on-one and in person. As Leann McQueen, a residential coordinator for the Young Adult Institute in Brooklyn, told ABC News about her organization’s services to young people with disabilities, “People need assistance with personal hygiene. Even being asked to wash your hands can be more challenging.”

Christine Motokane is an articulate self-advocate to whom I spoke when conducting research for my book, Autism Matters. In her blog, Redefining Normal: A Young Woman’s Journey with Autism, she outlines some of the challenges she faces in this extraordinary time. Everything that is familiar to her has closed – her workplace, her favorite restaurants, other non-essential business – even the weekly outings with her support person have suddenly ended.

“I had to spend and celebrate my 28th birthday at home. All of these sudden changes coupled with the fluidity and ever-changing nature of this situation, has caused my anxiety to skyrocket,” she writes.

This is particularly worrisome because anxiety is often a constant state of being for autistic individuals who are hyper-sensitive to stimuli like light and touch. While “social distancing” has relieved many of those with autism of the anxiety about shaking hands or otherwise engaging in unwanted physical contact with others, and may be comforted by the six foot barrier others are maintaining, they must also confront a degree of exacerbated uncertainty that we all find discomfiting but those with autism may be traumatized by.

Autistica, the UK’s leading autism research charity, notes that autistic individuals react to uncertainty by avoiding such situations, by over-preparing for them or by gathering information that might reduce the uncertainty. None of these strategies is well-suited to this crisis because it can’t be avoided, over-preparing can lead to hoarding and gathering information about an unknown can just result in heightened anxiety.

The strategies that I enunciated in the previous post to manage anxiety about COVID-19 probably apply to everyone, inadequate though they may seem. Keeping as much of the normalcy in our lives as possible, creating a routine and some structure to our days and engaging in activities that enable some type of social contact can ward off some of the avalanche of change in our lives.

This reminds me of a story I came across in my research about maintaining the positive therapy momentum for children with autism during COVID-19. One mother, in an effort to keep life as normal as possible for her son, wakes him up at the usual time, has him dress in school clothes, maintains the entire morning routine, ushers him into the car and drives him around the neighborhood for 20 minutes before returning home for “school”.

Unfortunately, many parents have neither the time nor the bandwidth for such an effective regimen, innovative though it is. They are struggling to keep it together themselves, juggling work at home with the intrusions of family and a lack of respite from 24-hour-a-day demands of caring for children and keeping them constructively busy.

For situations like that, it’s important not to let perfection be the enemy of good. There is no playbook for a circumstance none of us has ever encountered before. Any steps families take, even small ones, like maintaining wake-up and bedtime routines, creating regular family fun time (playing games, reading books, etc.), exercising and dedicating time to learning daily, will all help to maintain a sense of routine and normalcy which will accrue to the benefit of all of us, adults and children alike.

Published By:
Ronit Molko, Ph.D., BCBA-D
Advisor to Investors in Behavioral Health

Helpful Tips for Your Child’s Routine Change

Helpful Tips for Your Child’s Routine Change

By: Ronit Molko, Ph.D., BCBA-D and Sally Burke, M.S. Ed., BCBA

The sudden disruption in routine due to COVID-19 is challenging for all individuals to manage as we adjust to a new, and hopefully short-lived, normal of staying at home and ceasing most of our regular activities. For families of individuals with autism and other disabilities, the disruption can be especially challenging.

Although families deal with planned schedule changes or transitions, such as school vacations and summer breaks every year, what we are currently experiencing is different. This is a sudden disruption to our everyday routines with the added pressure of trying to create a viable learning environment to accommodate home schooling or online learning as schools try to complete the year in a virtual environment.

This sudden disruption means that both teachers and parents have not had adequate time to prepare for distance learning and that children have unexpectedly been pulled out of school. Children rely on set classroom schedules and routines and seeing the same friends and teachers every day. Now add into the mix the cessation of center-based services, therapeutic interventions, and possibly in-home visits being limited or put on hold to help minimize the spread of Coronavirus (COVID-19) across the United States. This will likely cause confusion and uncertainty for many. Easing anxiety, setting up activities, and staying busy during these unexpected and possibly challenging times can help with this change.

Being transparent about the situation:

Easing any anxiety your child may be experiencing, due to the changes in schedules and routines, is the first step to settling in to a “new” temporary schedule. Children will perceive the added stress and anxiety in the environment and so it’s important to explain to your child what is happening in their world. Keep it simple with basic information and present the facts at the level appropriate for your child’s age and ability to absorb this type of information.  Even though you may be concerned yourself, it is important to model calmness when talking about the virus. Children pick up on your social cues and how you respond to new things. If they have questions, answer them. Don’t be afraid to talk about it. Remind them that they are safe. And, remind them that this will end and they will return to school and to their favorite activities.

There are a variety of websites with information on how to talk to your child about the coronavirus. This website offers a social story about the change in schedule due to the Coronavirus as well as a printable PDF.

An increase in sensory needs, anxiety and meltdowns:

Individuals with Autism Spectrum Disorder generally have increased sensory needs and it is likely that those needs will not be met during this challenging time. Expect to see an increase in anxiety, depression and perhaps OCD. Additionally, since autistic individuals frequently have trouble communicating verbally, often the only sign that your child is experiencing anxiety is through external expressions such as meltdowns and increased self-stimulatory behaviors. It is likely that you may see new behaviors in which your child may not have engaged in previously.

It is important to provide the space for your child to express his concerns. Russell Lehmann, motivational speaker and author reminds us that outbursts and meltdowns are the expression of inner pain, overwhelm, confusion, stress and anxiety. Simply, be present with your child and listen more than you talk. Validation of their experience and a safe space to release their emotions is important in helping to move through it. Helping children take long deep breaths throughout the day will calm the nervous system (both yours and theirs) and help to mitigate the build-up of stress and emotion.

Establishing routines:

It helps to create a routine at home that provides consistency and predictability. If your child does better with visual schedules, there are great resources available to you on the internet that can help you create your own daily written or visual schedules. We tend to take for granted that we know what is coming based on the time of day (12 means lunch is near), but many of our children can’t associate time of day with certain activities. Creating a schedule will help allow them to see what’s coming next throughout their day and may help to lessen some challenging behaviors that may emerge due to their lack of routine.

If this feels overwhelming, try creating mini-routines for different parts of the day; a waking routine, a morning play routine, a “schooltime” or learning routine,  a lunch routine etc. This is also a great opportunity to create and teach hygiene routines such as handwashing.

If you are receiving in-home ABA, seek help and advice from your BCBA to assist you in developing a daily schedule that will help meet your family’s needs. There are also greater resources available, via Telehealth, to receive parent training from your BCBA.

Staying busy, especially during your child’s typical school, daycare or ABA-service hours is the next step. The solidarity of many world-wide educational and additional sites offering free online resources is remarkable during this time of uncertainty. Educational sites, as well as museums, zoos, and even Disney are offering virtual treats for children of all ages. There are free options for temporary internet service if your family needs it. This is also a time to connect with your children in new ways- cooking or baking, playing cards and boardgames, taking a walk, making up games, and learning life skills. Alternate your schedule between electronic activities, written work, crafts or projects and playing inside or outside when available. Use transition warnings (timers, first/then statements and choices) whenever possible throughout the day to help navigate and manage their new schedules.

Remain calm, set up a new daily routine and stay busy. And remember that patience, not perfection, is the key. Know that this is going to be hard- taking it moment to moment makes it more manageable. These tips should help minimize the effects of these sudden and unexpected events on your child and your family. Stay safe and healthy.